Undocumented treatments have led to some of the worst disasters in the history of medicine.

Print screen from Dagbladet.no July 14th 2015 TIME TO LEARN: Should we not learn from the mistakes made by researchers with home knitted hypotheses? asks professor of pediatrics at the University of Oslo, Ola Didrik Saugstad, referring to the treatment of the disease ME/CSF.

 

Original published 14 July 2015, at. 8:00
Written by Ola Didrik Saugstad
Both Dagbladet and Saugstad has approved the publication of the translation.

[This is a quick translation of the original article in leading Norwegian newspaper Dagbladet.no, made for our English speaking contacts. It was made because we noticed that several English contacts asked people to translate with translategoogle. The translation translategoogle made was partly contradictory to the original, which often happens because translategoogle does not take into account the Norwegian word order.]

Undocumented treatments have led to some of the worst disasters in the history of medicine.

Many ME patients feel today that the public health system is exacerbating their condition.

In 1981 Bruno Bettelheim wrote: «All my life I have worked with children who had their lives destroyed because their mothers hated them.» Bettelheim views influenced the view on autism for years. He believed that the mothers of autistic children were cold, so-called «refrigerator mothers» who hated their children and thus induced autism on them. Today we know that autism is a complex biological disease. Bettelheim, who also believed allergy is psychologically triggered, did irreparable damage with his undocumented hypotheses.

The American pediatrician Benjamin Spock’s book «The Child» sold 50 million copies and contained many fine thoughts. But Spock made a disastrous error when he in the 1956 edition recommended that infants should lie on their stomach instead of their back. Thus, he contributed greatly to the thousands of infants who died in the SIDS epidemic culminating in the late 1980’s when they realized that laying the babies on their stomach increases the risk of SIDS. Bettelheim and Spock are examples of authorities who did not base their recommendations on scientific evidence, but on their own thoughts and beliefs. We should learn from this not to make similar mistakes. But do we?

An example on how we don’t, is the stress theory that has become popular as an explanation for ME. Many believe that one can be cured of the disease by mastering ones’ own stress. «It’s all in your head, you just need to convince yourself to get well», many patients have been told. But this explanation has never been scientifically proven. On the contrary, those behind the stress theory have selectively used some findings that fit with their own hypothesis. This is what is called an inductive fallacy.

It was such a catastrophic failure Bettelheim and Spock did, and now it seems that the same mistake has been made by those who believe that ME is a stress response. For a new report from the Institute of Medicine in the US states that ME/CFS is a physical condition, not a mental illness. The head of the committee told The Washington Post on February 10 this year that «We must now once and for all dismiss the idea that this is just psychosomatic or that people imagine this, or simply are lazy.» [Quote not checked with the English original.]

About the same time Columbia University Press could report from a study that showed that ME/CFS patients sometimes have very high levels of inflammatory markers, cytokines, but only early in the disease. Later, patients often have lower levels than in healthy controls. This may explain why studies on inflammation markers in ME have given contradictory results. The researchers had not taken into account when in the course of the disease the measurements were made.

Another recent study has shown that muscle cells from ME patients respond differently than healthy muscle cells to electrical stimulation. ME muscles do not take up glucose as one would normally expect. This may explain the energy failure ME patients describe at the slightest exertion.

These are important findings because they confirm what ME patients have claimed, and it explains the strong contrast that has arisen between the ME-scientists who believe in stress theory and the patients themselves. It is simply the patients who are right and not the therapists with their theories that are not adapted to reality.

Despite the inconclusive scientific basis, the stress theory has received considerable support in the Norwegian health care system and in the public. Now we understand why many ME patients feel that the public health system is exacerbating their condition. Many feel they are being bullied by NAV [the National social welfare system], and parents are threatened by child protective services because they protect their child from the harmful stress theory. Conditions have developed so that ME-patients’ situation in Norway has become a human rights’ problem.

After the new results were published stating that ME is an immunological condition, one would think that the conditions were better for Norwegian ME patients. But the follower of the stress theory do not give up. In a recent posting on NRK.no/viten eg. Ingrid B Helland, head of the Norwegian Centre service for CFS/ME, claims that «we really don’t know much.» Then she tells about a small Norwegian study which found no increased cytokines in ME patients. Thus she weakened the new signals from the United States, without mentioning that the Norwegian study has done just the mistakes the US study reveals. In the same article senior researcher Lille Beth Larun claims about ME: «What is proven by research to give releif in ME is graded exercise therapy (GET) and cognitive therapy (CBT).» But these two approaches have made very many ME patients sicker. What Larun does not tell is that one does not find any effect of CBT in ME if using strict diagnostic criteria. Rather than rejoice the new knowledge about ME, Helland and Larun continues to cast doubt on the US findings and helps to maintain a status quo for the treatment of ME patients in Norway.

Should we not start to learn from the mistakes made by researchers with home knitted hypotheses? The history of Sally Clark is more than sobering. She lost two sons in SIDS and was arrested in 1998 along with her husband on suspicion of having killed their children. In the trial the English pediatrician Roy Meadow claimed that the chance of two children dying in SIDS was 1 in 73 million. Clark was convicted of murder and began atonement in Styal women’s prison. Later it came out that one of her sons had an infection and could have died of natural causes, but the evidence for this was held back for the trial. Later it also turned out that the statistical data Meadow had submitted had major shortcomings. The court had placed more emphasis on Meadows private views than on the facts. In 2003, Clark was acquitted after 3 years in prison.

For years, ME patients has been discredited and forced to undergo unsuitable treatments that made them sicker, they have been forced by NAV [the National social welfare system] to take the undocumented LP [Lightning Process] treatment, and good parents who have protected their children have been threatened by the CPS.

The paradigm shift in the perceptions of ME gives hope for a better future for these afflicted patients. That hope Norwegian ME patients should also be allowed to share.

[Editor’s note after queries from our foreign readers:
Prof. Saugstad is a pediatrician, but also probably the doctor who has seen – and visited – most severely ill ME patients in Norway.]

Om ME-foreldrene

Bloggen ME-foreldrene drives av foreldre til barn og unge med ME. Vi samarbeider om å øke innsikt og forståelse for vår og våre barns situasjon. Støtter biomedisinsk ME-forskning. Du finner oss på facebook.com/ME-foreldrene og på Twitter som @MEforeldrene. Les mer under «Om oss» og «Hjem» (Sidene vil oppdateres fortløpende, da ME-mammaene som startet bloggen nylig har slått seg sammen med en gruppa ME-pappaer.)
Dette innlegget ble publisert i ME in Norwegian media og merket med , . Bokmerk permalenken.

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